Given the Lancet's recent retraction of Andrew Wakefield's article that started the whole MMR vaccines-cause-autism scare, I'm thinking again about how ambiguous the world of autism is. We don't have a good answer to a very important question: "What causes autism?" This sucks.
And of course without that answer, we have a tough time treating autism effectively. A treatment (whether it's biomedical or behavioral doesn't matter) seems to help one child but not another. A whole set of treatments helps one child but not another. For every so-called "recovered" child out there, there are uncounted numbers of children whose parents did the same treatments without the same happy results This sucks.
And of course without a clear protocol for treatment, two things happen. First, legitimate doctors and therapists promote treatments they genuinely believe might help. Their clinical work may turn up something useful...or not. That's clinical science. Second, snake-oil salesmen and unethical doctors who know their therapies don't work bleed families dry, drain retirement funds, and force some families into bankruptcy by selling false hope. This sucks, too.
And the fighting that results on message boards and in print between the different sides of the autism debates feeds on all this ambiguity, fostering factionalism, chaos, judgment, and hatred. Honest to goodness hatred. If you're a fan of biomedical/detox interventions, how many times have you rolled your eyes at someone promoting ABA? If you're a fan of behavioral therapies, how many times have you rolled your eyes at someone who is detoxing their autistic child using a special diet or chelation therapy? Come on, you know you have done this. Because without facts and good science and hard numbers, autism becomes more than a pervasive developmental disorder; it becomse a philosophy, or maybe a religion. It's about faith, not fact. And faith is a powerful thing.
There's a lot that sucks about all this. Unfortunately (like we need more unfortunate in this situation), we parents have to DO something to help our children. We have to make choices without good information, and we want to believe that the choices we make are right. There's too much at stake.
Because George and I are both pretty mainstream in our medical thinking, we decided over three years ago to use more mainstream treatments: speech, physical, and occupational therapies, and our school district's TEACCH-based special education classes. We also took the child psychologist's advice and put Jack in activities and classes with typical kids. He goes to camp and VBS in the summer (with a helper to keep him focused). He has inclusion time every day at school. And he's making really good progress. All his teachers and therapists and his doctor are happy to see how far he's come. Since what we're doing seems to be working, we're quite logically sticking with it. But there's always that little voice that says, "What if we're missing something?"
I really hate that little voice.
I'm sure doctors and therapists and educators face the same dilemma in their own actions, and I appreciate them weighing in on this question as well.
How do you make choices in this profoundly ambiguous situation? How certain are you when you do something that it will work? How do you decide if it's working or not? How do you know it's time to stop and move on to something else? In short, how do you deal with the ambiguity surrounding autism?